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DebC

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Everything posted by DebC

  1. I agree with having titers drawn. We had our daughter's drawn and her varicella titers were through the roof and much higher than they would have been on a healthy child. She developed shingles on her ear two weeks to the day of receiving her varicella booster. We have a religious exemption in Texas and have those exemptions for both kids. I am hoping that we will continue to be able to keep that exemption with vaccines being a hot topic right now.
  2. I would definitely run the IGeneX test for Lyme. After 5 years with our daughter waxing and waning and our son developing symptoms for 2 years, I finally threw in the towel a year ago and had both kids tested (as well as myself). All of us ended up having Lyme -- I never would have guessed it. We have been in treatment since October and I feel better than I have in 10 years (I had gotten sick so gradually that I thought I was just aging until I had strep and myco that I couldn't get rid of). Our daughter now has no symptoms (age 14), and our son (almost 11) is progressing to no symptoms (h
  3. Our son did a little over 6 months of Azith followed by nearly a year of Biaxin and his titers barely budged. At that point, I finally tested for Lyme and he was positive. We have been on a Lyme protocol and his titers are still slow to drop. They are switching him from his current protocol back to a protocol that includes Azith. We will take a wait and see approach for the next several months and will draw blood then to see if he is moving in the right direction or if we need to change again. We are hopeful that as we address bartonella and mycoplasma with our new protocol, titers will f
  4. riffleshell -- Best wishes as you travel for your appointment. We will be praying that your youngest heals quickly and that the behaviors disappear as quickly as they appeared. mybabyo- Just forwarded information on Dr. Rao to you.
  5. Our son did 9 months on azithromycin for mycoplasma. During that time, we saw brief improvement before his titers started rising. He switched to Biaxin this past January 250 mg a.m. and 250 mg p.m. He seemed to improve but his blood work this fall showed that his numbers were going up again and his tic was returning. Therefore, our doctor increased the dosage to 250 mg a.m. and 500 mg p.m. The tic seems to be gone so I am hoping that we are heading in the right direction. Next blood work to check on things will be in November and we see our LLMD for the first time in October. I will be
  6. I'm pretty sure that we are a congenital Lyme as well. My kids are at least second generation if not third or more. Both are PANDAS kids as well. I was diagnosed in June through IGeneX (CDC positive) and once I came back positive, I had the kids tested (daughter IGeneX positive and son had many + and IND bands). I had two known tick bites back in my early teens in the 1980's and may have contracted Lyme then. However, I suspect I am probably congenital Lyme as well. My father has Behcet's Syndrome, afib, sore knees, blood clots, multiple myeloma, and shaky hands when he writes. My sister
  7. There is a Facebook page (private) for Teens With PANDAS: https://www.facebook.com/groups/129017327268769/?ref=br_tf I even found one for PANDAS siblings: https://www.facebook.com/groups/456841354386637/
  8. Our daughter's blood work showed that she was low in zinc so we supplement.
  9. My husband forwarded this to me asking if there was any connection or tie in to PANDAS. I have been googling ipopolysaccharide, LPS, and TLR4 along with PANDAS and am not finding a connection. Any thoughts on this? http://www.sciencedaily.com/releases/2014/02/140210114548.htm
  10. Our daughter also had the Genova and Pharmesan tests done here in TX. Once we started supplementing for her deficiencies along with the antibiotic she'd been on for over a year, we saw improvment quite rapidly. We have had our whole family tested through our daughter's doctor for mycoplasma and strep. My husband and I both had high mycoplasma titers and were on antibiotic for 30 days in June of this past year. Our son developed PANDAS symptoms this fall after we had strep and what we thought was a cold that my husband came home with and gave to me as well. It turns out that it was a mycop
  11. Our doctor checked for many different viruses as well as bacterial infections.
  12. Our daughter has been on azithromycin for several years. She was initially on 250 mg every other day. This every other day dose started 2 years ago and lasted for the duration of a year. However, she had elevated mycoplasma titers that were not responding to this dose last April. Therefore, In May of last year, her dose was upped to 250 mg of azithromycin daily and she continues to take that dose as we monitor blood work and watch her titers gradually decrease. She also had additional testing a year ago on neurotransmitters and other minerals. A few over supplies and deficiencies were
  13. Our PANDAS daughter was asymptomatic for mycoplasma but when we tested her this spring, her titer was 727 and should have been between 0 and 90. She is currently on azithromycin. We just had follow-up blood work to determine if the azith is helping. If I find that it is not, I will mention doxy to our treating physician.
  14. I'm the Dallas Area Support Group Leader. Our daughter just started seeing Dr. Rao in May and we have seen significant improvement! He ran quite a few tests. Our daughter was diagnosed 3 1/2 years ago and had improved until last fall when her anxiety and OCD increased once again even with a prophylactic dose of azithromycin provided by our wonderful ENT who also sees PANDAS patients. Since so many area support group members had a good experience with Dr. Rao, we decided to add him to our team of doctors. He ran a set of tests from Pharmesan Labs which checked our daughter's neurotransmitt
  15. Our daughter was on a prophylactic dose of azith and when we had bloodwork run in May, her mycoplasma titer was 727 (normal should be 0 to 90). Our doctor increased her azithromycin to 250 mg every day and we are seeing improvements. She has been on this dose since mid May and will be on it indefinitely. She is scheduled for bloodwork to follow up on the titers in September. That bloodwork will probably determine how much longer we are on the full dose before going back to the maintenance prophylactic dose. She was completely asymptomatic for mycoplasma. She had no cough, no cold symptom
  16. The scarey part about mycoplasma (as with strep) is that kids can be totally asymptomatic and have it. Our daughter had symptoms all spring and we couldn't figure out why they weren't going away. We had another blood draw done in May and her mycoplastma titers were 727 (the normal range is between 0 and 90). She is on her third month of azithromycin and we go back in for follow-up bloodwork the beginning of September. In our extensive testing in May, we also discovered that her glutamate level was high, zinc was low, and CoQ10 was low. She's on GABA to reduce the glutamate, zinc, and CoQ1
  17. We also throw out tooth paste tubes since the toothbrush comes into contact with the tip. We throw away chap stick also. When we had strep repeatedly this spring with myself and our non PANDAS son, I even went so far as to wash our feather pillows and dry them on high heat. Since I also had it, I threw out most of my makeup and started over since my first round of clindamycin didn't get rid of it (allergic to penicillin and cephalosporins).
  18. I really think I need someone who will be active and on board with her PANDAS dx since that is the major hurdle we are dealing with right now. She has 4 other serious dxs yet PANDAS is really the only one causing an issue right now. Thanks The group is just parents at this point. I will add you to the distribution list so that you can stay up to date on when we are meeting. I just e-mailed the list of local doctors to you!
  19. We are in Plano. I lead the Dallas area PANDAS support group. I have a list of doctors that families from our group have found helpful. Our daughter currently sees and ENT and an immunologist, both on the list, who have been amazing! If you would like me to e-mail the list, message me your address. If you would like to attend a meeting, you are welcome at any time. Our next meeting is the coming Monday. Let me know if you'd like additional information!
  20. This is our third full year of school since our daughter's PANDAS diagnosis. She is currently in the 5th grade and was diagnosed in January of 2nd grade. Now that we have three full years of MAP testing under out belts, I can definitely see a pattern. The MAP tests are tests that our school district uses to determine our children's knowledge and progress in various subjects. They are computerized tests and are given three times a year (fall, winter, spring). When I sit down and look at the line graph of her math MAP test results over the last three years, there is definitely a pattern. S
  21. Our daughter is currently being treated with azithromycin. She has been on a prophylactic dose every M/W/F during the school year for the last couple of years. We noticed a return of mild symptoms this spring and had titers run again. Her mycoplasma titer should be between 0 and 99. It was 727. Therefore, she is being treated for a chronic mycoplasma infection which requires, in her case, azithromycin daily for 60 days. Azithromycin can be a drug used for our PANDAS kids. There are quite a few PANDAS kids in our support group who are on a prophylactic dose of azith. I'm hoping that it
  22. One of our Dallas are support group members has a friend in Arkansas who is looking for a support group. I've checked the sites which list PANDAS support groups but didn't see one listed for Arkansas. Is anyone aware of a group in that state?
  23. Here is the letter that I e-mail to our teachers each year. It could be tailored and changed a bit to go home to parents: Before the year starts, I wanted to take a moment to send some information out about an autoimmune disorder which Lillian has. This disorder is called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). When a child has PANDAS, an autoimmune reaction occurs as a result of a strep infection. Instead of the child's antibodies attacking the strep bacteria, they breach the basal brain barrier and attack the basal ganglia causing swelling of th
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